My husband, Josh, and I got married in 2016. Three years later, in 2019, after I graduated from nursing school and we purchased our first home, we decided it was finally time to start our family. To our delight, we got pregnant on the very first month we tried, in July 2019. I found out on my own, and I could barely contain my excitement as I waited to tell Josh when he got home from work.
At 12 weeks, I took an at-home blood test to find out the baby’s gender. The results came back three days later, telling us we were having a boy. When we went in for our 17-week ultrasound, however, the technician told us we were expecting a girl. I was surprised but just as thrilled. The ultrasound showed no abnormalities, so I chalked up the discrepancy to a possible mix-up with my at-home test and didn’t even mention it to anyone.
As the pregnancy continued, I felt great. I loved feeling the baby kick and hiccup, and overall, everything seemed smooth. At 37 weeks, we learned the baby was breech, which meant I would need a scheduled cesarean section. At first, I was devastated—I had imagined a natural birth and experiencing labor—but as a planner, I found comfort in knowing exactly when we would meet our child.
On March 24, 2020, I woke at 4 a.m., filled with excitement and unable to sleep. The anticipation of meeting our baby, seeing the little face behind all the kicks and hiccups, was overwhelming. Josh and I went in for the c-section, and at 8:15 a.m., we welcomed our firstborn. To our astonishment, the baby we had thought was a girl turned out to be a boy.
We didn’t name him right away, feeling completely blindsided by the gender surprise, but our joy didn’t waver. A few weeks later, we decided on the name Bentley Ray. The first hours were blissful, full of newborn cuddles—but soon, things began to change. Bentley struggled to latch and feed from a bottle. Nurses tried feeding him with a spoon, but he wouldn’t take it. That’s when a lactation consultant noticed something we hadn’t seen before: Bentley had a cleft palate, an opening in the roof of his mouth, likely explaining his feeding difficulties.
A few hours later, I noticed something else: his second and third toes on both feet were slightly webbed. My heart sank. It looked adorable, yet I had an uneasy feeling, especially after the cleft palate discovery.
As night fell, Bentley’s condition worsened. He began vomiting stomach bile and still hadn’t had his first bowel movement. At 2 a.m., his pediatrician returned to the hospital to evaluate him and start fluids via IV. Watching him wheeled out of my room with Josh following, I felt completely alone and helpless. I tried to distract myself by watching a cooking show, but my mind raced, consumed with fear.
When Bentley and Josh returned about 45 minutes later, the doctor sat down, visibly emotional, and delivered the news: “With the defects we are finding, this is likely some type of syndrome. Your baby needs to be transferred to a NICU.”
I was heartbroken. We were given two hospital options: one 1.5 hours away that allowed both parents to stay 24/7, and a children’s hospital three hours away that allowed only one parent at a time. I knew I couldn’t be away from Bentley, and I couldn’t ask Josh to stay alone, so we chose the closer hospital in Fort Wayne, Indiana.
While waiting for the ambulance, I held Bentley tightly, not wanting to let him go. After nearly 24 hours awake, exhausted physically, mentally, and emotionally, I felt drained of tears. The moment the ambulance arrived, it felt as though they were taking my child from me, even though Josh went with him. I remained in my hospital bed, numb, longing to be reunited with my little family.
C-section mothers typically stay two nights, but I was able to leave after just 27 hours. Finally, I was reunited with Josh and Bentley. The admitting doctor had a presumptive diagnosis for Bentley from memory, later confirmed by bloodwork: Smith-Lemli-Opitz Syndrome (SLOS), a rare genetic autosomal recessive condition affecting cholesterol production. Neither Josh nor I had any idea we were carriers, and future children would have a one in four chance of having the syndrome.
In the NICU, we learned Bentley had a heart murmur with a small hole in his heart, a cataract in his left eye, microcephaly, an absent suck/swallow reflex, and needed a gastrostomy tube (g-tube) for nutrition, which he still uses today. Once stabilized, we were discharged home.
Bentley turned one on March 24, 2021. Our first year with him was filled with appointments, therapies, and surgeries. The car rides to appointments—sometimes up to three hours one way—have become moments of reflection and peace amidst the chaos. Bentley receives physical and occupational therapy for low muscle tone and sees a speech therapist for oral skills. Every milestone, from head control to sitting, fills me with tears of joy.
In his first year, Bentley underwent seven surgeries: g-tube placement, pyloric stenosis correction, cataract removal, bowel obstruction surgery leading to a Hirschsprung’s diagnosis, cleft palate repair, ear tubes, and another eye surgery. Each pre-op moment breaks my heart, but Bentley meets every challenge with courage and a smile, as if telling me, “Mom, I’ve got this.”
The early weeks at home were emotionally heavy. I never imagined becoming a special needs parent and often cried quietly at night, wishing I had known about the SLOS gene. Yet as Bentley grew, his resilience filled me with strength. My husband and I created a TikTok account to advocate for special needs children, share our experiences, and connect with other families, providing support we didn’t realize we needed.
Every day teaches me to celebrate small victories. Bentley may face developmental delays, but he makes progress at his own pace. We rejoice in every new skill, every smile, every giggle. To us, Bentley is fearfully and wonderfully made—unique, rare, and absolutely perfect.
